I am feeling very bad about reporting my own husband to the neurologist about the deterioration in his driving ability. I have felt quite unsafe in the passenger seat of late and when a letter from the DVLA arrived to advise they were contacting the consultant of his fitness to drive. I went behind his back to let the neurologist know of my concerns. My husband has now found out that I contact the consultant and he is rightly feeling very angry and let down. The problem is that he is still in denial of having PSP and won't discuss any matters concerning the symtoms so I was in a very difficult position. The neurologist actually rang to thank me for the information nd said I had done the right thing but I still feel so deceitful going behind Ben's back. I would love to wake up and find all of this crappy PSP stuff is all a dream, or rather nightmare.

40 Replies

What an awful situation for you. However bad it feels you have done the right thing. If you had said nothing and he had gone on to maim (or worse) a child - you both would have felt worse. Sorry to be so blunt but sometimes facts have to be faced. I can imagine how betrayed he feels but maybe deep down he knows you are right.

I had the same dilemma couple of years back and was very shocked when he had an optician test him and doc consulted and was passed as ok.I wanted to make them go on a drive with him.He now tells me he knew I was right because out alone he had a few near misses.I just hope when I am unsafe someone will report me.Although I know what progressive means I still try to believe that an infection has given him a blip and he will be better soon, perhaps thats the only way to cope.You did the right thing.

Its awful, isn't it ? I also asked the neurologist, in front of Chris , if he should still be driving and he said no. Chris took it very hard and, like you, I felt bad. But, as others have said, you would feel even worse if you felt responsible for an injury. Its a really difficult disease to accept. Chris still feels he will "beat it " and we can't extinguish hope if it keeps them going. My fear is that if he really accepted it he would get depressed. Try not to feel bad about doing what you know was right. Take care, Jean

I had been telling my husband he was dangerous driving for some time before diagnosis. The response was that he had been driving for 40 years and never had an accident. The day of diagnosis he asked the neurologist if he could continue to drive as he felt OK. The reply he got was that lots of PSP sufferers are eventually diagnosed after being in a serious road accident which has injured themselves or others or both. As hard as it is, stopping a PSP sufferer from driving, however upset they get, is the only thing to do.

My husband hated being driven around, I didn't particularly like being the main driver either but we soon got used to it. I still have to take my sat Nav wherever I go though.

Sat Navs are brilliant...I couldn't be without one. The lovely lady inside mine has taken me all the way to Cornwall and back.(I live in Kent). It is the farthest that I have ever driven...Roy always did most of the driving ,except if drinking was involved and then I always drove.

Our eldest son lives on the Norfolk Suffolk border so that's the furthest I've driven, from West Kent. I was terrified of driving on the M25 so the first time I did it we left at 4am and arrived at our son's in time for breakfast. I've done it about 8 times now so leave at a reasonable time but still hate the M 25. I've also driven to Boscombe near Bournemouth 4 times. Unfortunately I won't be making either journey again with my husband. It's too far for him to sit in his wheelchair and getting him out half way is too much of an effort with all the luggage and equipment piled around him. We'll be taking some nice day trips though once it gets a bit warmer.

Oh dear you did the right thing, I know it is so hard to deal with this horrible psp so many different things happen all the time you see something new happening it is so hard to handle, please don't beat yourself up it was for the best, and deep down your husband knows this. My husband will not accept he has psp and he also does not want to talk about it just take care off yourself and please don't beat yourself up about it you are doing an amazing job Yvonne

I had started to get uneasy as a passenger while my husband was driving something that I never did before .

he had started to misjudge pavements especially going round a bend , then he would wander to the centre of the road .

I suggested he needed to get his eyes tested which he did . we had an automatic car and thought maybe the car was getting too big for him to drive safely so we bought a much smaller car .

not being a driver any more myself obviously was concerned how we would manage without having a car .

I asked him if he realised what was happening but he genuinely didn't see it himself .

whenever I thought he was concentrating , of course h was but the blank face said something else . I would keep checking he was .

After finding self holding my breath sometime I decided to bite the bullet and explain that I thought it was best that he gave up driving for a while at least

being. Sensible man and knowing how it would also affect my lifestyle he knew I wouldn't have suggested it if it wasn't right .

he never drove afterwards . Pie kept the car for quite a while if my family visited they would use it and take me anywhere I needed . we eventually sold it . I now do my big shop on line and soon got use to it .

it took a bit of getting use to Nanna but once you do what difference it made , I felt more independent and dint have to bother my daughter too much .. she still takes me to look around but we spend most of our time in the coffee shop .

Hi Katie, I think most of us have been through what you are! I was threatening to tell S's doctor for ages about his driving. Thinking back, the problems started at least 10 years before there was suspicion there was something wrong. S had a silent stroke about 4 years ago and they said at the time, he couldn't drive for two months. So when S had a day of many bad falls, coming down from a mountain! I thought perhaps he had had another stroke! This was the start of us going to see the Neuro consultant. I stopped S from driving that day and he hasn't driven since. The consultant asked if he was still driving, when I replied, "not at the moment," the answer was "Good, keep it that way!!!"

It was the hardest thing I had done to date, but my nerves are so much better. The rows we had before, what his poor car had gone through, well need I say more!!! I was very much, just drive to the supermarket kind of girl. Now I will drive most places. Still not happy in a city, but coping. I actually quite enjoy it, to be honest!

I know all this sucks, but you and your husband will get use to it. I have in the past, taken him to a VERY quiet place and let him drive for 5 minutes, especially when we bought a new car. But no more, unfortunately!!! Me and the car would not survive any more.

I really appreciate how you feel but you have done the right thing, Katie. We could not persuade my mother to stop my dad, who has PSP, driving as she could not drive and she wanted to continue using the car. Their doctor refused to stop him, though we asked him for help, as it would restrict their independence. They ended up stuck on a level crossing with the barriers down each side of them and a train coming! Fortunately it was a stopping train not a through train and it stopped at the station about a hundred yards away and my dad did eventually reverse back through the barrier, breaking it. After that the police took his licence, much to our relief. But stopping driving earlier would have been much less traumatic.

Don't feel bad, you did it for his sake as you don't want him to be in an accident. I know my husband's driving became a worry. There are other road users who are perfectly capable of driving but choose not to follow the rules. If you were both injured in an accident it would be horrid. It doesn't have to be his fault, but how would you be able to care for your husband if you were injured. PSP has a lot to answer for. It is an awful disease. Stay strong.

Completely natural to feel guilty about this, but honestly we had to do the same thing with my step-father, he was a liability and kept clipping the curb and had several near misses. One of the most frustrating symptoms of PSP is their 'Reckless' behaviour, - they think they are OK - hence falling over, when told to stay sitting - etc. Try to make light of as many little falls and enjoy the good days. When necessary and if possible get as much support as possible.

Hi Katiebow, I really feel for you going through the denial stage still, my husband did too. It was Malc's lack of driving ability that alerted me to something being wrong and eventually he agreed that he was probably best letting me drive, it took some weeks but I was very uncomfortable being a passenger like you and in the end I had to say that I would sell the car (its mine!) if he didn't give up. He saw that I was serious and being down here with no transport is not at all ideal - he gave in and now says he likes not having to think about routes and concentrating. Hopefully your husband will come around in time, but rest assured you did the right thing, he was not only a potential danger to himself and you but other road users.

When the diagnosis was Parkinsons our neurologist suggested Janet have a driver assessment. On informing the DVLA, via a medical declaration form, they decided J could still drive! However after a near miss in the village, I did the dominant male bit. And then a few months before our PSP diagnosis, our neurologist noticed her eyes closed, and said she mustn't drive. She wasn't anyway by then. But the hardest thing for J was having to send her licence back. I guess when you've had one for 40 years it seems wrong to have to give it up. But the DVLA said in a letter to us that if her condition changed in the future she could re-apply for her licence!!

Please please dont feel bad about dobbing him in I was getting nervous of Brians driving but he sais he was ok and lets face it he used to drive buses and coaches including London site seeing tours so I thought perhaps it was just me getting a bit windy. But when he did a high speed doughnut in reverse takeing out 2 cars and putting a parked 4x4 through a brick wall he said there and then he will not drive again. Thank god nobody was hurt but we was both shook up and I must admit I feel very lucky to have got out alive. Janexx

You did the right thing. I read an article not long ago written by the husband of a woman killed by an elderly person who should not have been driving. She was the mother of their 2 yr old, an absolute and avoidable tragedy. You have avoided the chance of that sort of terrible thing happening and your husband bearing the responsibility by doing this. I know this rapid loss of independence is so incredibly difficult but sadly it is the new normal for our loved ones that we all have to help them adjust to in some way or other (as do we). I would add - hide the keys - my mum would still get in the car and try to go somewhere on one of her impulses even without them.

Back in 2006 - 07ish my wife Elizabeth was first misdiagnosed with Fibromyalgia which more or less coincided with her retirement. The previous 10 years she had been self employed as a mobile optometrist, visiting housebound people in their own homes to carry out eye tests in order to prescribe specs in order to provide maximum benefit for their specific visual needs in their home environment. Her client group stretched from Portland Bill in Dorset to Southampton. At that time she was covering anything from 30 to 40,000 miles per year. During that 10 year period she had one accident. That occurred when a client she had just registered as severely visually impaired was directing her while reversing out of his property, and he directed her into a solid obstacle which was in her mirror blind spot. I teased her wickedly over that one for ages.

Anyway, once Fibromyalgia was arrived at by our GP we notified DVLA. who appeared almost disinterested about it - just told her to notify them if circumstances worsened. So time moved on and eventually I began to notice a slight deterioration in her driving skills. I found myself cringing away from the passenger door, as you do, when we came too close to the kerb or another car whatever - more frequently but I didn't flag it up to her. It was around this time (mid 2011), that our GP had done a bit of research and mentioned PSP to her. He referred her to a neurologist who confirmed it. We contacted DVLA again to update them with the new diagnosis and they got back to us instructing Elizabeth to attend a driving assessment test they were arranging for her. When we attended, there was an examiner and a psychologist waiting to accompany Elizabeth on the assessment. They told me they would be on the road for about 45 minutes and they were back after 20. No prizes for guessing the outcome then. Elizabeth took it on the chin but it was a nasty blow for her. I did take the lead in all of the above, but if Elizabeth had said no to it, I would have done it anyway as the 'responsible adult'. You did the right thing Katie - good for you. We had a stair lift installed yesterday and I told Elizabeth I wouldn't report her to DVLA. this time.

Thank you Katie I've been signed up to this forum for a few weeks now and this is my first post - you prompted me and thanks for that.

I think the hardest thing for me about PSP is that it has separated us. The going behind his back is a part of that. That I know something that he doesn't know about himself is very troubling. It is part of losing him. That I have to be the adult and set rules and tell him no, really puts him in the child position and is hard on both of us.

Just remember you are the one that protects him now since he has bad judgment, like a child, and needs you to be the good mommy every so often for his own good. It is a very big change in the relationship and takes a lot of getting used to and tears and anger to make it through.

Don't worry about his not accepting the diagnosis. I think it is a normal response to horrible news. The hard part is that you know and you are alone with that knowledge. His denial protects him so let it be. My Bob never accepts any of it...my father had Parkinson's for over 30 years and never accepted it....I don't think that is bad..I just protect (ed) them for doing dangerous things and let the denial be.

Yes. That is exactly how it is for us. We talk about the disease and its effects openly but he believes he can beat it. He needs to feel he has some power. I collude with this by silence. He fell and hurt his head last night and has spent today in bed and seeing him weak and lacking confidence is worse. He was always a very positive man so I want that to continue [ as long as I hang on to reality ]. Oh dear !

I really agree. I used to feel differently about this when I was young. Like everyone needed the truth all of the time even if they didn't want to hear it. But as I grew older and a bit wiser, I realized that that isn't necessarily so or even good. I think I just wanted to be able to share my loss with my husband, to grieve with him and not hold the knowledge all by myself. That was and is terribly hard. I have talked with him about his having an illness (but he denies that and just plain forgets...so I leave it alone.)

Yes, the change is huge. Having no one to talk to or be happy to see and smile together is a terrible loss. It just continues and continues..it is an endless disease that with Bob is so slowly whittling away at the man I knew that nothing will be left of the memory of him.

That's my fear. His sister said to me that she feels she lost her brother two years ago. So do I but I still have the shadow with me. I am also full of admiration at his stoicism and patience which were not characteristics I saw before.We still can share humour only its slower and gentle. I don't want anyone to forget who he was.

I remember when I realised when my husband couldn't or shouldn't drive anymore! he also was in denial about any of the symptoms that he had of CBD. We had so many arguments and it wasn't until one day we had an emergency phone call from our daughter informing us that our grandson had been knocked down by a car , outside his home!now before you worry, our grandson who was 6 at the time,was on his bike and luckily the bike took the brunt of the car...he had his leg broken.Anyway Roy got in the driving seat and we were so frantic , wanting to get to the hospital ASAP but Roy's driving was so bad that I feared that we would end up in hospital, so I demanded that he stop the car in a lay-by and so he could get out of the driving seat and I took over.

He never drove again after that and even admitted at the time that I was right , but his driving even scared himself!

Before he was diagnosed , my husband wouldn't let me tell anyone that he was ill...it was a nightmare.....I had to whisper on the phone and even my children weren't even aloud to know but of course they noticed changes and we would talk about their dad but it did make me feel like you, that I was going behind his back and betraying his confidence.

Roy has a brother who he never saw too much but was so upset that we didn't tell him of Roy's illness....I do feel bad about that and it feels like an excuse when I say that Roy didn't want to tell anyone!

Once your husband gets more use to the awful realisation of the terrible disease..and he will as time goes on and more of the condition rises it's ugly head into your lives.....he will know that were are right!

Thanks everybody for your comments, it is so reassuring g to know that other people faced the same situation and felt they had to take the same action. Going behind the back of someone you have spent the last 40 years with just feels wrong.